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Married to Alzheimer’s: Don’t cross the road: fear of dementia tips society into carelessness

Tue, Jul 29, 2014, 01:00

Steph Booth

Tony Booth: people treat him differently since he was diagnosed with Alzheimer’s disease. Photograph: George Skipper

I was about seven when my great-grandmother Lizzie Buckley died. I have vague, half-memories of her, informed by a certain amount of fear and horror. Lizzie lived with my gran. Like many old ladies at the time, she had a fox fur and would threaten it would bite me if I did not do as I was told.

When it was time to go, my mother insisted I kiss my great-grandmother goodbye. I never wanted to. Her hard, toothless mouth was horrible to me. Only mortal fear of her fox fur forced my embrace.

At the end of her life, Lizzie’s bed was brought down to Gran’s front parlour. It made looking after her easier. I remember some years later Gran saying something about Lizzie being “gaga”.

With the indifference of youth I did not pay much attention to her words. Now, I understand that Lizzie was probably suffering the effects of old age and dementia.

I am telling this story because it seems to me that over the past 50 years there have been fundamental changes in our attitude to old age and/or dementia. There was never any question but that Lizzie would die in her own bed.

The other thing that strikes me now is that, as a child, I was expected to treat her with the same respect and consideration that I was taught to give any adult. Her frailty was no excuse to sideline her, or to exclude her from a central role in her family or her involvement with the wider world.

Now, it seems, my childish fear has become the norm in terms of behaviour towards the elderly and those with dementia. Our youth-obsessed society is less willing to accept, or to be confronted by the reality of the imperfections imposed by maturity.

Careless attitude

This attitude tips our society into carelessness. We are careless of the gifts older people offer: their humanity, their history, their understanding and their seen-it-all- before wisdom. Increasingly, we want any messy social or health problems tidied up and dealt with. So we have created retirement villages and built more and more care homes for older people.

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But what happens if older people have dementia, too? That certainly complicates our benign assumption that we have elder care sorted. And further, what if that person is being cared for at home and makes forays into the public domain?

A friend whose husband died recently in a car crash told me people she had known for a long time would cross the road, pretending they had not seen her, to avoid conversation. Her grief made her different. My experience, caring for my husband, Tony, has been similar.

Not only is Tony losing his sense of self as his dementia progresses, but there are people who are afraid of his illness, or worried they no longer know how to approach him. They have drifted out of our lives. As a consequence, Tony, that very sociable being, is also being lost.

Dementia frightens people. Too often they do not understand it is a disease and not a mental health issue. They worry about saying or doing the wrong thing.

What will they do if he does not recognise them and, if they get through that, what about dealing with any odd or unexpected behaviour?

These are the people who, if they bump into me around town will ask brightly how he is, but are careful to go no farther than polite concern. Then there are people whose unfortunate response is to patronise – speaking to me rather than Tony.

Those of the “Does he take sugar?” persuasion. I am quite sure they are doing their best to be kind and supportive, but chewing my tongue I find myself struggling for patience, caught between politeness or delivering a rude reply.

Not an idiot

Recently, we were sitting having a coffee with someone we knew. She was talking to Tony not quite . . . in . . . this . . . way, but More. Like. This. That is, she was emphasising each word carefully . He watched her for several minutes before responding, “Why. Are. You. Talking. To. Me. Like. This? I’m. Not. An. Idiot.”

I chose not to intervene, but instead to stare at the little whirl in the middle of my coffee. To her credit, she apologised.

Which brings me back to Lizzie Buckley. Looking back now through the prism of the experience of my seven-year-old self, it seems there was a straightforwardness to her health issues and care.

As a carer, I am utterly relieved and thankful to see the increased research and health professional concern to understand the causes, diagnosis and treatment of dementia.

Good old days

I certainly am not advocating a return to the “good old days”. What I am saying is, raising awareness about dementia and removing the fear factor about how to respond to sufferers is crucial, both for sufferers and their carers. It is also vital to reintroduce that matter-of-fact approach that was common in the past.

This is a main plank in helping to support people living with the disease to maintain, or prolong, their place and role in mainstream society.

It is about normalising this disease – just as cancer and other degenerative diseases have been normalised through an increased public understanding, and the subsequent willingness to talk openly and behave with kindness.

So please don’t cross the road, or pretend you have not seen us. Do treat us as the people you have always known.

You do not have to be frightened or embarrassed by our changed situation. As FDR once said, in entirely different circumstances, “The only thing we have to fear is fear itself.” Steph Booth lives in the north of England with her husband, the actor Tony Booth, who has Alzheimer’s disease.

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